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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


I'd be concerned as well based on symptoms. If not CF, then there's obviously something else going on here. Has your child ever had a respiratory (throat or sputum) to test for common CF bugs. Sometimes if they culture things like pseudomonas or steno. Maltophilia, that can be a sign for further testing.

IMO, keep pushing for answers, if anything to rule out cf
I would try to find a doctor who will treat the symptoms -- treat as if he does have CF. Ask that they do a respiratory culture to see if any common CF bugs are growing. With DS, he has one done every 3-6 months and they determine what antibiotic the "bug" he's growing is sensitive to. Pseudomonas -- tobramycin and/or cipro. Steno. Maltophilia -- septra...

And with the borderline result, it wouldn't hurt to retake it. As for a geneticist --- ANYONE can collect blood and submit the test to the proper lab. In the states they have Ambry, Quest, Mayo to name a few that test for over 1500 mutations.

Just keep pushing for answers. I realize healthcare is different where you're located, but I have to remind myself from time to time that we're actually the customers, that we're paying for these tests and appointments.





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